Over time, the caregiver child  frequently finds the necessity to leave the work force as the labors of care giving become too time consuming and/or stressful.  Vacations and sick leave had been utilized when a parent was hospitalized, leaves of absence were taken during extended illnesses and recovery of their loved-one.   I have noted on many forums, adult children asking advice on whether or not it was fair to use their loved one’s funds to help ease the financial burden that care giving  often causes.  As the aging population in the United States increases, more and more workers in their “sandwich years” are finding it necessary to leave the work force.

None of us feel comfortable accepting payment for caring for our parents or loved ones.  After all, they cared for us as we grew into adulthood; shouldn’t we be there to care for them too?  We would all love to be in a financial position to provide such care without compensation, but the truth of the matter is, most of us are not in that position.  Most of us need some kind of an income to support ourselves and our family. 

When a caregiver leaves the work force to care for an aging parent, they are giving up many things: an income, of course, health insurance, social security contributions (which will cause a reflection in their own social security benefits later in life), employer contributions to their retirement plan, and the chance for advancement in their career.  In addition, there in an increase in food, utility, and fuel costs in the caregiving home.

Elder law attorneys are recognizing this fact and are beginning to address the issue of compensation for the caregiving child as they work with  aging parent to have their affairs are arranged.  A parent will often suggest that a caregiving child be left an additional bequest in his or her will in recognition of the services that he/she provided.  Mr. Bernhardt and Mr. Wytychak, an elder law attorney in northern Idaho state that this is not a good idea for several reasons.

First of all, with the high cost of long-term care, there is no guarantee that there will be any funds left over to pass along. 

 Secondly, an unequal bequest may cause jealousy amongst the other siblings who would receive less and who often can’t comprehend the stresses and financial burdens of caregiving.

Thirdly, if one is working towards “spending down” so that Medicaid will be available for additional long term care, ” gifts” are not allowed to be given to ANY child (except by trust to child with a long-term disability), without penalty.

Therefore, the best strategy is to set up a caregiver contract between the infirmed parent and the caregiving child, drafted by an attorney who represents the elder and reviewed by an attorney who represents the caregiver (although the latter is not necessary).  The agreement details all services that the caregiver will provide, which costs may be charged to the elder (medications, personal toiletries, gifts to grandchildren, etc), and the amount of compensation. 

The contract is very useful because it is evidence that the payments from parent to child are not gifts and therefore cannot cause a penalty when applying for Medicaid.  It is also an attempt to reduce friction between family members because the parent is clearly stating their intention. (Friction often still exists, though, because, again, the siblings do not see the day to day activities of the caregiver.)

When a caregiving contract is put into place, the caregiver who is receiving the compensation, must supply a financial report to the courts once a year in order to show that no additional monies are being removed from the infirmed parent’s account.  This accountability is actually a benefit to the elder, as well.

In the experience of most elder law attorneys, parents realize that they are asking a lot from a caregiving child and are greatful for the care that they are receiving (although many times they lose the ability to say so).  You must NOT feel guilty.  If you are caring for an aging or infirmed parent, please consider consulting a reputable elder law attorney for advice on how to proceed.

Sometimes referrals come from friends, sometimes from support groups and hospitals and  sometimes simply from searching through the yellow pages or googling the internet.  This takes time and is also not a guarantee that the resource you DO find is the best one for your particular need.

Recently I discovered a great internet resource called The Senior List . Its Co-founders Chris and Amie Clark describe it as “a national online resource that helps match people with senior-related services in their communities” and comes complete with consumer reviews. 

Once entering their site, you simply click on a state, then a particular city and you will receive a list of providers in that area under the categories of housing, professional care and ancillary services.  As I was exploring the site myself, I noticed that the elderlaw attorney that I had utilized to set up much of my father’s affairs was listed.  Because I had an excellent experience with him, I will now go back and leave a positive review. 

The site also offers educational articles and links to other important resources.

According to Baby Boomer Insights, a blog about those of us born between 1946 and 1964,  “already, there are over 8,000 businesses in the database, but for it to realize its full potential, businesses need to list themselves and consumers need to rate the services they use so that others can benefit from their experiences. Businesses that don’t consistently receive at least three stars (of a possible five)  from consumers are dropped from the site.”

The Senior List is a great resource for care givers nation-wide. We, in the sandwich generation, often use the internet  and because  we often find it difficult to “get out” or because we are care giving by long-distance, this type of solution just makes sense.  If we can see that others have used a particular person or service with success, then we can be confident that we are doing the best we can for our loved ones. 

Won’t you take a moment to check out the site and if their are any resources listed with whom you have experience, or if you’d like to add a business that you would recommend to others, please do.

These bath tubs are advertised as being great for elderly, disabled or mobility-impaired individuals.  They are made of fiberglass or acrylic, are found in sizes ranging from 48″ X 28″ to 60″X32″  and are said to fit any bathroom.  If the bathtub area is too big, there is an “extension kit” which essentially adds a shelf area to the tub.  They each have a seat installed and there is also the option of choosing one that is complete with a hydrotherapy unit (we chose this option because my father has both arthritis and leg muscle cramps).  The cost for these units can be in the thousands, so it is a fairly expensive purchase but can be one that enables a person to continue to live at home rather than in an assisted living facility.

Having experienced the walk-in tub for over 6 months, I am going to say that it was not the right choice for my father, but it may be a good choice for other senior citizens.

The positive aspects of it were the built-in anti-slip seat, the anti-slip tub floor, the low-level entry, the temperature control (it does not allow the temperature of the “hot” water to be hot enough to burn), the height on the sides of the tub which helps to keep my father from falling, the ease of cleaning the “unit” and the hydrotherapy.

The negative aspects of it are that it is an almost claustrophobic bathing experience when using the shower curtain, as the bathing area is very small.  Additionally, if your bathroom is such that an extension (or shelf)  is required, the shower curtain must sit on the inside of the tub making an even smaller bathing area. 

This is definitely not a product that will enable a person with dementia to have more independence.  It’s much too technical.  Once entering the tub, there is a special lever that must be pulled in order to make the tub water-tight.  My father is confused by the hand-held shower sprayer (doesn’t realize that it can be left hanging in its casing) and several times, I have heard him turn on the hydrotherapy jets without having any water in the tub (is a burnt-out motor in our near future?).  He also forgets (with short-term memory, that means 2 minutes later) that the shower curtain must be on the inside of the tub itself, so very often, we are sopping up water from the floor after his shower (water on the bathroom floor contributes to slipping, as well.)

It is also NOT conducive to caregivers helping with the showering of  the patients or loved-one.  The sides are too high, thus contributing to back strain and the water does not stay in its designated area.  If a caregiver was helping  their loved-one to bathe (rather than shower), it would be fine.

I think this is probably a great product for those in their late 60s and 70s who may be “a little wobbly” and could use the extra support and also benefit from the hydrotherapy.  I don’t think it’s a good product choice at all for those with dementia who are trying to continue to bathe on their own.

Your thoughts?

Please see our YouTube video on this subject for more information.

How does one deal with the guilt?

Be realistic. Take comfort in the fact that you’re doing the best with what you have available to you. If adult diapers are not something you can handle, especially when you are female and they belong to your FATHER, then hiring a caregiver or considering assisted living may be the BEST alternative.

 Be aware that you have rights as a caregiver and that caring for a parent should NOT make you sick nor give up your own life; therefore, you should not feel guilty for taking some time for yourself and for your family.

Be gentle with yourself.  Guilt is like the other (numerous) emotions that come with caregiving.  It is like a cloud floating by, with another cloud of emotion next in line.